AHRQ: How clinical registries advance personalized medicine

Projects funded through the Agency for Healthcare Research and Quality (AHRQ) are harnessing big data to answer questions such as the best knee replacement for a particular patient and how to effectively treat a child's inflammatory bowel disease (IBD), according to a new issue brief.

The brief focuses on how patient registries can help providers make decisions about particular patients sitting before them.

AHRQ has been working to better link electronic health records with administrative claims data, pharmacy data and diagnostic data, and to collect patient-specific information such as medication side effects, pain after surgery, disease symptoms and experience of care, to provide doctors with more insight. With this information, the agency is pushing for use of enhanced clinical registries to create learning healthcare systems.

The issue brief highlights registries that include:

  • The ImproveCareNow Registry: The world's largest pediatric IBD registry, where participants collect patient- and family-reported data on symptoms, medications, complications and more.
  • The Surgical Care and Outcomes Assessment Program in Washington State: Through this clinical registry, hospitals collect and share data. It's credited with saving Washington State hospitals an estimated $67.3 million in one year by helping avoid costly complications.
  • The Function and Outcomes Research for Comparative Effectiveness in Total Joint Replacement project: In this initiative at the University of Massachusetts, researchers study the effectiveness of TJR procedures, various implants and patient outcomes.

The AHRQ is under fire, however, as being duplicative of other federal research efforts. The House Appropriations Committee in June passed a bill to eliminate the agency.

In an interview with the Journal of the American Medical Association, director Richard Kronick, Ph.D, touted AHRQ's work as making "substantial investments in research to figure out how health information technology can be used to improve quality and safety, how it can be used to improve outcomes for patients and to improve the delivery of healthcare."

To learn more:
- read the issue brief

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